People who actively participate in their health care and disease treatment have better outcomes than passive recipients of care. Particularly when dealing with a rare disease, it is up to you, the patient (or care giver of such patient), to learn what you can and ask the right questions to get and keep your treatment on the best path for you.
1st Things First:
- Get to know your CBC (Complete Blood Count) and other blood lab tests. Learn what each of the abbreviations mean, the important ones to track over time.
- Keep track of your lab test results over time.
- Keep track of any symptoms and their severity as they occur (e.g., level of fatigue, headaches, itchiness, night sweats). They change over time and it is important to let your hematologist know.
Check out these sites for great information and suggestions:
Center for Advancing Health: http://www.cfah.org/blog/
This is the “Prepared Patient Blog” that was created and supported by the Center for Advancing Health (CFAH) and it’s leader Dr. Jessie Gruman, who was both a highly “prepared patient” and an expert on activating and preparing patients for unexpected or serious illness. The blog contains numerous links to other resources, including Jessie’s books and white papers and reviews written by CHAH subject matter experts and leaders in patient activation, advocacy and support. Jessie died in 2014.
Informed Medical Decisions Foundation: http://www.informedmedicaldecisions.org/patient-resources/
IMDF provides background on shared decision making and links to aids and educational tools that promote higher quality decisions regarding tests, screening, treatment and care planning.
Free sites to help inform family & friends and coordinate care
Caring Bridge: www.caringbridge.org
Your personal CaringBridge website is your place to share health updates, photos and videos with the people who care about you. People can sign your personal guestbook to encourage you along the way. Your personal CaringBridge website is designed to rally your family and friends together, to offer you support when and how you need it. It is ad free and there is no charge to use the service.
Lotsa Helping Hands: http://lotsahelpinghands.com
Lotsa Helping Hands is a web-based calendar and scheduler to help coordinate care for someone or a family in need. Organize meals, rides to appointments or kids’ activities, and other helpful tasks on-line. Volunteers register on your personal site and are notified when opportunities arise; sign up for a task and get reminders. The service is free.